Posts: 13

Topic: Intrasurgical spacer and proton therapy

My husband has been on chemo since June and was doing better than anyone expected. Then suddenly the chemo quit working and the mass was the same size or a little larger than when we began. It is a 14x13 cm mass. Doctor discontinued chemo until we could see the radiologist. They have scheduled him for an Alloderm spacer to be surgically placed between the stomach/small bowel and the liver in order to protect that tissue while giving the equivalent of 10 weeks of radiation in 3 weeks through proton therapy directly into the liver. They say they are doing this with curative intent. Now I do know that he is 1 cm over the protocal for this treatment. But, they are doing it anyway. They said at this point, that is his best option. Has anyone else out there had this done. We were told this was part of an ongoing trial begun several years ago. but, the spacer being implanted has only been done at MD Anderson we are told 5 times with tumors this large. They said it has proven very successful.

Re: Intrasurgical spacer and proton therapy

Dianna,

I had the spacers put in prior to my Stereostatic Body Radiation Therapy (SBRT). The spacers were put in this past March and I started SBRT in May. They were put in for the reasons you stated...to protect the other organs from the SBRT.

I'm being treated at MSKCC and the surgeon who put in my spacers is Dr. Yoon who came to MSKCC from Mass Gen. I was told he invented this procedure and I was the first one it was performed on at MSKCC. He had hoped to do it laparoscopically but was not able to because of adhesions in the area from previous surgery years ago (not related to my CC) and also from the traditional radiation I had in January 2012. I had to stay in the hospital for a week, again that was because of the surgery not being able to be done laparoscopically. My stomach was sore for awhile but I was able to start SBRT in May and complete the five treatments.

Re: Intrasurgical spacer and proton therapy

Mary you should be so proud to be the first. Can you imagine leading the way to something as big as this? It has been a few months now but do you feel 'spacy?' Couldn't resist. Hope you are doing fantabulous!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHINGAny suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Intrasurgical spacer and proton therapy

So good to hear directly from someone that has had this done. They have told us it will be laproscopically and hand assisted. So, i am sure he will be quite sore. They are telling him 2-4 days in the hospital...just depends on how well he is doing. My concern is more about them beginning the proton therapy so soon after the surgery. They are saying 7 days after the surgery. But, they are also telling me that the proton therapy shouldn't give him many side affects.

Re: Intrasurgical spacer and proton therapy

Spacer surgery went well and they changed plan from proton to IMRT instead. He is in his 4th week of treatment and the fatigue has really got him right now. Today he began to run 101.5 temp and call into doctor now. But, other than fatigue he has been doing well. Everything tastes bad and he is forcing himself to eat. But, those seem to be issues that everyone faces. He finishes on Dec 16th and then we wait approx. 2 months before new scans are done to see how successful imrt was. The waiting is what makes it so hard sometimes. Just got to stay positive.

Re: Intrasurgical spacer and proton therapy

hsprazr......so glad to hear that everything worked well. Do you know the reasons for the switch from Proton to IMRT? Wishing for the fever to be temporary only. Congratulations on the upcoming, final treatment and that the results will be everything we wish for. Hugs,Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Intrasurgical spacer and proton therapy

Marion - They said they changed from proton to IMRT because even with the spacer, the mass was so large and with blood vessels that were affected they felt it would be safer and more effective. He had scans each day before they did it to make sure nothing had moved. A couple times they did have to adjust their numbers to compensate for a shift within that area of his abdomen. They said they would not be able to do scans each day with the proton therapy. Then we found out that our insurance wouldn't allow the proton but would the IMRT. So, that could have also had something to do with the change. But, the doctor said that working up all the info they have to in order to make those decisions it was very clear that the IMRT would be the better option.He finished with it on Dec 16th and we go next Friday for new CT to see how effective it has been. Praying for a miracle.

Re: Intrasurgical spacer and proton therapy

hisprazr....so glad it worked out. Proton therapy for CC is denied coverage by the majority of insurance carriers. That industry sets rulings for coverage based on positive outcomes for the majority of patients and whatever else reason they choose to apply. (The reasons are endless.) We hope that with a larger group of patient selection by their physician some changes will be made. In the meantime, my fingers and everything else is crossed for a spectacular result for your husband.HugsMarion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Intrasurgical spacer and proton therapy

I meet with a surgeon at MDA tomorrow to schedule when to put in my spacer. The rad onc told me even after having the spacer I still may no be able to get proton therapy for pretty much the same reasons as above but Dr. Javle doesn't seem to think that's going to be a problem so I don't know. Hisprazr- Who is your insurance provider? Does your husband go to MDA? Hope all is going well with him now.

Re: Intrasurgical spacer and proton therapy

Marion - They said they changed from proton to IMRT because even with the spacer, the mass was so large and with blood vessels that were affected they felt it would be safer and more effective.

Hoping your upcoming scans are good. I'm about to start IMRT myself in a few weeks. When I asked my medical and radiation oncologists why IMRT instead of proton therapy, I was told that they think the IMRT is better because of all the tentacles on my Klatskin tumor (extrahepatic perihilar). They feel there is a better chance of not missing some of it with the IMRT rather than the proton. I was willing to travel for proton if I had to - Baylor won't be opening their proton facility until 2015. No one said a word about insurance not covering it for cc.

I think the waiting 2 months for new scans when I'm done will be awful. As I said in my signature line, I'm an impatient patient.

Re: Intrasurgical spacer and proton therapy

Danna0325 wrote:

I meet with a surgeon at MDA tomorrow to schedule when to put in my spacer. The rad onc told me even after having the spacer I still may no be able to get proton therapy for pretty much the same reasons as above but Dr. Javle doesn't seem to think that's going to be a problem so I don't know. Hisprazr- Who is your insurance provider? Does your husband go to MDA? Hope all is going well with him now.

Re: Intrasurgical spacer and proton therapy

Lisa....I think that the majority of us want things revealed "yesterday." Hence, a 2 months wait for a scan seems like eternity. But, a too early scan does not accurately reflect the entire response to the procedure. So, we will just have to entertain each other and help you re-direct your thoughts. Hugs,Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

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